Hello. I'm new to the Community. I was originally diagnosed with M.E. but have now been told that I have atypical Lupus with secondary Hughes Syndrome. My rheumatologist has asked me to try Plaquenil, which I am finding very hard to tolerate and I am interested in the potential promise offered by low dose naltrexone (LDN), as an alternative to steroids, etc. There are a number of websites touting it as a 'miracle cure' for a whole host of illnesses, which arouses my scepticism; I am also aware that there has been little other than preliminary formal research into LDN (and not for use with lupus, as far as I am aware). However it is, in its original context, a well proven, safe drug, so I am interested to try to find out more. It would be great to hear from anyone who has tried/is trying it and your experiences. Many thanks.

4 Replies

I am taking it, I also have Systemic Lupus, Hughes Syndrome (so member on that one also), Sjorgrens, Hypothyrodiism and Psoriatic Arthropathy. I can't tolerate Plaquenil either. I take LDN, under the guidance of Dr T GIlhooly via Essential Health Clinic, Glasgow, he is the leading authority on this. So I flew to Glasgow in order to be assessed. Mary F x

Hi Mary. You kindly replied to one of my queries re Plaquenil on the Hughes Syndrome site, too. I'm really sorry to hear you have so many things going on with you - although, the realities of the situation aside, one could say it is quite an impressive collection! I have come across Dr Gilhooly's name elsewhere (is he a GP who originally treated MS patients with LDN?) and, conveniently, I am just outside Glasgow. However I am wondering how this would 'sit' with my rheumatologist; I'm only just getting to know him and I don't wish to put his 'back up'. Equally, I don't want to overlook something that may benefit me hugely. What is your experience here - how have your doctors reacted? And do you take LDN alongside any 'conventional' treatments e.g. steroids?

Hi, it's very interesting to read your post,as my sister who has ms is on LDN,and sees dr GIlhooly,she lives in Oban.She has wanted me to try it for awhile-and I must say,like you I am bit scared to annoy my rheum!I live near Cambridge so bit of a trek to seethes gp,but it must work!I am sick of taking large doses of immunopressants ,but the theory behind LDN is to boost the immune system,and the rheum are dampenin down ours ..for lupus !My sister feels great tho .When I approached or mentioned the use of LDN to my consultant she was quiet dismissive ,so will have another think!I used to liven north Glasgow which would of been easier to go and chat with this man.Hope you keeping well.

Hi, many thanks for your reply. I had thought that LDN worked - in autoimmune states, at least - by increasing NK cell response (desirable in lupus?) but also by reducing B cell activity (which presumably is desirable; very roughly, this is how Rituximab works, I believe). Hence my interest. In any case, there is one alternative to coming to Glasgow, that I know of. That is Sarah Myhill in Wales (she's close to the border with Herefordshire or Shropshire but also offers phone consultations - approx £70 for half an hour) and I know she is now working with and prescribing LDN (although whether she has experience of working with lupus, I don't know). I have consulted her myself, by phone - for what I thought was M.E. I have found her to be very good and ethical. She has a website - if you type Sarah Myhill into Google you will find it. The GMC have been trying to strike her off for years, which I believe they are now trying to do with Dr Gilhooly. No doubt for the same types of rationale - a GP prepared to work outside 'the box' where a patient's needs warrant it. Most of what she thinks and does is on her website, although - unfortunately - it is nowhere near as comprehensive as it was as the GMC compelled her to remove certain content which it deemed 'non party line'. In addition to prescribing, she has a 'shop' selling all types of supplements at very reasonable prices - I order over the phone. Do let me know how you get on, whatever avenue you choose to pursue. Best wishes.